Monday, May 18, 2009

Surgery Update

Thank you so much to each and every one of you for your prayers, emails, text messages, and voice mails. Your love and support is what has gotten us this far. You have given us more than you could ever know. I’m sorry that it’s taken me so long to get this update out to you all, things have been a bit hectic. We arrived in Pittsburgh on Wednesday afternoon and Wes went in to surgery Thursday morning at about 10:30. The plan for the surgery was for them to make sure the prior surgery had not overlooked anything and if not, to go ahead and do a partial rhizotomy. A partial rhizotomy basically means to partially cut the nerve. At about 2:30 that afternoon Dr. Janetta came out to speak with us and let us know that everything had gone well. He informed us that they had gone ahead with the rhizotomy and had also put in more Teflon where they had last time. Wes stayed in recovery until about 7:30 that evening when they were finally able to get him into a room. Thankfully Wes was doing much better than he did last time. As you may remember, last time he had a very difficult time due to fluid build up in his brain. As we had been praying, this did not happen this time. When Wez was able to talk to us we learned that he had not lost any function on the left side of his face which was another prayer answered. He has lost sensation on most of the left side. He says it is numb and the left side of his lips and tongue it’s tingly. He said the best comparison he can think of is like going to the dentist and being numbed up. Thankfully he has no face pain though and that was the trade off that we were hoping for. There was a little concern on Friday because he started running a fever but by Saturday he was doing much better and they decided to discharge him from the hospital that afternoon. It is still unbelievable to me that they can do brain surgery and then send you on your own 2 or 3 days later!

Saturday afternoon ended up being quite difficult because when we arrived at our apartment we quickly realized there was no air conditioning! Wez soon began to run a fever again and broke out in a rash all over. The building we are staying in apparently had to turn off the a.c. for the whole weekend and failed to notify us. We franticly began looking for a hotel to stay at for the next day or 2 in order to get him in cool conditions but due to a convention in town everything was booked. Luckily we were able to find a place with one room left. It wasn’t the cleanest but it was air-conditioned. It’s very difficult to move Wez but thankfully once we got there he started to feel much better after a few hours his fever went back down. Today the weather has gotten much cooler so we were able to move once again back to our original accommodations. The move wasn’t easy but hopefully we will be staying put now! Overall Wez is doing very well. He has pain associated with the operation as well as nausea and headaches but they are not nearly as severe as last time. Wez’s mom will be leaving tomorrow morning to go back to Nashville and on Tuesday Wez and I will be going back to the hospital to meet with his surgeon. I will let you know how the visit goes and when we are able to travel home. Last time we left a week after the surgery to come home and it was a difficult trip so depending on how he feels we may stay a bit longer. Please continue to keep us in your prayers. I can’t even begin to express my gratitude to all of you. Everyone has been so generous in so many ways. We feel so incredibly blessed and loved.

Always,
Rachel Bez

Monday, May 11, 2009

Back to Pittsburgh

Hi to all of you!

I am writing to give you the most recent update with Wez’s surgery. As you all probably know form my prior emails, Wez and I were in Pittsburgh about 5 weeks ago due to the fact that his pain had returned. When we went, we were under the impression that they were planning to redo the surgery. After meeting with the neurosurgeon Dr. Janetta, the decision was made to postpone surgery and try some different medications. Unfortunately those were unsuccessful. The past few weeks have been very difficult for Wez and after speaking with the doctors over the phone, they have decided to go ahead with the surgery again. Wez is scheduled for the 14th of May which is this Thursday. We will be leaving on Wednesday to fly back to Pittsburgh. In this surgery they will go in through the same incision that was made last time but this time they will be cutting the nerve. During his last surgery the doctors had found 2 blood vessels that had actually fused together with the nerve. This is what had been causing his excruciating pain. They were able to put in Teflon plates and separate the vessels from the nerve but apparently it was too little too late. They are unsure why Wez was pain free for 2 months before the pain returned but their best guess is that the nerve is just too damaged and is going back to what it has known for the past 4 years. By cutting the nerve the pain will be eliminated. Wez will loose sensation on the left side of his face in areas and has the risk of loosing function. Please keep him in your prayers for a successful surgery and for there to be no loss of function. Please also pray for a quick recovery. We will be staying in Pittsburgh until Wez is able to travel back home. Compared to how he did last time we are expecting to be there for at least 1 ½ to 2 weeks.

Wez and I both want to thank each of you for your love and support of us through this difficult time. It is easy to loose faith when dealing with such disappointment but you all have kept me from doing that with your words of encouragement and love. We are so blessed to have so many people who care about us. It is a continual shock to me how many people that don’t even know us, care enough to give us financial aid and pray on our behalf. I have been so touched by the kindness and hope that I will be given the opportunity to give back to all of you in some way. I will do my best to keep everyone updated on how things are going as soon as I am able. I will have my cell phone as well as my computer with me so feel free to call or email and I will respond as soon as I can. Again thank you. Those two words will never be enough to explain my appreciation.


Always,

Rachel Bezuidenhout

Tuesday, April 7, 2009

Continued Recovery

I first would like to thank each and every one of you for your continued love, support and prayers on our behalf. As most of you already know, Wez had been suffering from a neurological disorder called Atypical Trigeminal Neuralgia for the past 4 years. Due to the amazing financial support of our church family and donations from friends, family, and even more people that we have never met, Wez was able to have a much needed surgery to give him pain relief. Wez had Micro vascular decompression surgery on January 23rd of this year and up until 2 weeks ago has been mostly pain free. After the first month of recovery Wez began experiencing pain that would come and go. Two weeks ago on Thursday, Wez’s face pain returned and has not subsided. We contacted his doctors and he was started on a round of Steroids as well as another medication to help with pain and swelling. Later the next week he began another medication. Much to our dismay the pain did not leave and our neurosurgeon, Dr.Jannetta, requested that we come back to Pittsburgh. They tentatively scheduled Wez for surgery again this Friday. We left Nashville on Monday and went to speak with the doctors this morning at Allegheny General Hospital.

Dr. Jannetta feels that the pain has returned due to the fact that the nerve is just extremely damaged due to being fused with the two blood vessels for such a long period of time. It is rare for the pain to return but he has seen it before. Due to the surgery being such a major operation, Dr.Jannetta has requested that we try one more option before going back in. In an attempt to “put the nerve to sleep” Wez is being started on 2 very strong medications. He will begin taking them as soon as we get home and the dosage will begin small and continue to increase over the next few days. Wez will continue on this medication for the next 6-8 weeks. His theory is that the medications will allow the nerve to repair and in turn relieve Wez of his pain. After 6 weeks, if the medications have been unsuccessful, Wez will be scheduled for surgery again. This time instead of putting in Teflon plates, they will just go ahead and cut the nerve. With this, Wez will be left with numbness on his face however he will be pain free.

We want to thank each and every one of you for your prayers for us. It has been a long road for us and we cherish the love and friendship each of you give us. Please continue to pray for us. We will be returning home on Thursday and Wez will begin his medications. The side effects of these will make the next few weeks difficult for Wez so please pray that he maintains a good outlook and that his pain subsides. I will do my best to keep everyone updated but please feel free to send me an email if you have any questions. Again, thank you all so much.

Love always,
Rachel Bezuidenhout

"And now just as you trusted Christ to save you, trust Him too, for each day's problems: live in vital union with him."
Colossians 2:6

Thursday, January 29, 2009

Going Home!

Hello again everyone,

Just wanted to give you all an update. Wez had his follow up appointment with Dr.Janetta yesterday (Tuesday) morning. He woke up not feeling very well and didn’t do too much better after we got to the hospital for his appointment. After meeting with us, Dr. Janetta decided to go ahead and have another lumbar puncture performed on Wez in order to relieve the excessive pressure he still seemed to have. At 2 that afternoon the procedure was done and we were able to go back to the apartment soon after.

We were scheduled to leave today(Wednesday) but the doctor asked that we wait another day so we rescheduled our flight to Thursday. Wez woke up today feeling much better. He is still in pain from the surgery but the headaches have gotten much better. As for his face pain, it seems to have gone away completely! If all goes well, we are scheduled to fly out tomorrow morning at 11 a.m. and after a layover in New York, arrive back in Nashville around 5 p.m.

Again, thank you all so much for your concern and love for us. Please pray for us to have a safe, stress free journey. I will keep everyone updated on Wez’s continued recovery. Can’t wait to be home!

Rachel Bez
WARNING: This e-mail is a suspected phishing scam.

Monday, January 26, 2009

Road to Recovery

Hello to all of you! I am so sorry that it has taken me a while to respond to your emails and phone calls. I have been at the hospital except to come to our room and shower since Thursday. I appreciate so much all of the messages and letters of concern and all of your prayers on our behalf. On Thursday 1/22 Wez went in for his surgery. The procedure is called micro vascular decompression surgery in case you didn’t already know. He went in at about 10 a.m. and came out at about 2:30 p.m. His Dr. was Dr. Jannetta here at Allegheny General Hospital in Pittsburgh. The surgery entails of making an incision at the base of his brain stem where the trigeminal nerve begins. They drill a hole about ½ an inch in length and width and go in to find the cause of his trigeminal neuralgia. The results for Wez were that they found a vein as well as an artery pressing directly on 2 different sections of his trigeminal nerve. They were able to put 2 Teflon plates in that will be a barrier between the nerve and the vessels. As far as the surgery goes, it went very well. They covered the opening in his skull with titanium mesh and then stitched him up.

The first night after the surgery was very difficult. He was in recovery until they got him a room at about 6 p.m. That evening he was in agonizing pain which we found out at about 3 a.m., was due to swelling in the lining of his brain as well as air that was trapped in during surgery. They did a CAT scan to confirm the diagnosis and then gave him steroids at about 4 a.m. to help with the swelling. At about 7 a.m. one of his doctors arrived and performed a lumbar puncture to relieve more pressure. That helped quite a bit and Wez was finally able to sleep for the first time since coming out of surgery. The doctor said about 1 out of 20 people that have this procedure end up with this problem.

Slowly, Wez began to have a bit more relief. He stayed in the hospital until late Sunday afternoon when they decided to release him. He is still in quite a bit of pain form the surgery and has a lot of nausea. Both are to be expected with this type of surgery. Dr. Jannetta has said to still expect some face pain for a week or so due to the fact that he has had these vessels rubbing on his nerve for so many years. The nerves retain memory of the trauma and take a little bit of time to begin healing. When I asked Wez what he thought about his face pain he said he can tell a difference but it is hard to say for sure how much because he is in so much pain from the surgery.

Today Wez’s parents left to return home but Wez and I have remained here in Pittsburgh. We are staying at Allegheny center which is an apartment that works with the hospital for people here for extended periods of time. Wez will have his post-op visit with Dr. Janetta tomorrow, 1/27 at 8:30. If all goes well and he is cleared to fly home we will be leaving to return to Nashville Wednesday. American Airlines has been very helpful and will have a wheel chair as well as assistance for us from here back home. Wez’s expected recovery time will be 4 -6 weeks.

I truly don’t know how to even begin to thank each and every one of you for your love and concern for us. The outpouring of compassion and prayers on our behalf has been overwhelming. With out all of your financial support and prayers we would not be here now. I hope and pray that some day I will have the opportunity to do what you all have done for us, for someone else in need. Please continue to pray for Wez to have a speedy recovery and a safe trip home. Our God is an amazing God. This has been a hard road for the both of us but through it we have learned what it truly means to “give it to God.” I will continue to keep everyone updated and feel free to call or email me. I will do my very best to answer any questions you may have. Again thank you from the bottom of our hearts.

“Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your request to God. And the peace of God, which transcends all understanding, will guard your hearts and minds in Christ Jesus.”
Philippians 4:4-7 NIV


Rachel Bezuidenhout

Friday, December 12, 2008

Exciting News!

I first would like to apologize for not updating the blog for quite some time. The past few weeks have been such a whirlwind. I have so much exciting news for everyone! A few weeks ago Wez and I went to our church home, Harpeth Community, with the request for prayers and any financial help that could be offered. The elders met with us and announced to the congregation our financial situation as well as the upcoming surgery cost. In a matter of 3 short weeks our church raised $30,000! Wez and I were in shock. It is just so amazing that so many people came together to help us. We have been incredibly blessed. With the money that has been donated so far, the hospital is allowing us to go ahead with the surgery. Any additional costs will just be billed to us, which brings me to the subject of the fund raiser that some Brentwood Academy staff has put together.

The Monday before Thanksgiving a meeting was held at the Brentwood library regarding a fund raiser that has been put together by some people that work with my brother in law, Warren Bezuidenhout. The basic idea is this: Each person at the meeting was given several cards with paper clips attached. Each person wanting to participate has been asked to go and “trade” their paperclip for something bigger. For example I was able to trade one of my paperclips to a friend who owns her own business. In exchange for my paperclip, she gave me a coupon for $150 worth of her company’s services. The idea is to continue trading (it might take more than one trade) until you have an item valued at $150 or more. On February 28th a “garage sale” will be held to sell all the items that people have been able to trade for. Each item there will cost $100 or whatever the purchaser would like to donate over that. If you would like to participate or want more information on the fund raiser, contact Sue Gering at sue_gering@brentwoodacademy.com

The hope is that whatever remaining cost we have will be able to be paid with the money raised at this garage sale. I am currently waiting on the finance department at Allagheny General Hospital to get the final cost of the surgery as well as tests and MRI scans that he will be required to have before we go. In the meantime I am getting pricing for our stay there.
The most exciting news of all is that we FINALLY have a surgery date! I spoke with Dr.Janetta’s nurse and she has booked Wez to have the microvascular decompression surgery at Allegheny General Hospital in Pittsburg on January 22nd! We have a pre-op visit scheduled for January 20th so we will leave on the 19th. Wez will stay in the hospital 2-3 days after the surgery and then must stay in town until at least the 27th when he will go back for his post-op visit. If they clear him to leave, then we will return home on the 28th of January.
Wez has an 80% chance of this surgery relieving him of his agonizing pain and I am sure with all of the prayers on our behalf, that his chances are even better. Thank you so, so much for all of your continued prayers and support. Each and every one of you has made such a difference in our lives. We have been forever changed.

With love and thanks,
Wez, Rachel, and Lily

Wednesday, November 19, 2008

11/19/2008

I would like to first thank each and every one of you for your support . The outpouring of love has been unbelievable. I had no idea how “alone” in this struggle with Wes’s health we really were until we had so many people come forward to offer their support and prayers. It is a hard thing to ask for help but it has been life changing for us. We have finally been given the opportunity to have hope that this surgery will happen for us.

This past Sunday we attended our church home at Harpeth Community and were once again amazed by people’s love and compassion. I have been in close contact with one of our elders, Bob Vanfleteren, regarding our current situation. When we arrived at church on Sunday he and Mr.Sanders, the other elder, took us aside and prayed for us. During the sermon, Mr. Harrington mentioned our situation and asked for any financial help that people may be able to offer as well as their prayers. It was a very uplifting day. During the second service Mr. Harrington announced some of the best news I think we have received in a long time. An anonymous donor has said that he/she will match all of the donations we receive from church members, up to $15,000! Wes and I were in shock. What an amazing gift. To whomever has made this incredibly generous offer, we are so incredibly grateful. Thank you from the bottom of our hearts.

To all those reading this that attend church at Harpeth Community and are interested in helping fund Wes’s surgery, please contact Bobby Harrington or his assistant Kathy Cawley at Harpeth Community Church (615) 790-0104.

Also, as a reminder to those interested in helping with the fund raiser that Brentwood Academy is hosting, there will be a meeting held at the Brentwood Library this coming Monday night, Nov. 24th at 7PM. Again thank you so much. It will never feel like saying thank you is enough to express our gratitude but please know that we are incredibly thankful for everyone’s help and prayers.


All of our love and thanks,
Wes Rachel and Lily